Diagnosis: Retinoblastoma
KnowTheGlow Co-Founder, Megan Webber, often speaks of “glow-incidences” when explaining how many families in the KTG community find their way to each other or how doctors and NGOs cross paths. This was very much the case with Megan’s most recent conversation with Roger March Alexandre. For most of his life, Roger had never met anyone else who had been diagnosed with retinoblastoma. As an adult, he became interested to find out if he carried the gene for retinoblastoma and he visited a geneticist. It was through this doctor that Roger was introduced to the Fundacio La Nineta Dels Ulls and its charismatic founder (and mother of a child with retinoblastoma), Carmé Julià Ferré (https://knowtheglow.org/julias-glow-story/). Roger and Carmé spoke by phone for more than half an hour and decided to meet in person. Upon meeting they felt instantly connected and the two remain close to this day. As Roger explained, it was perhaps because they had similar life experiences that they could so innately understand each other. Megan could see even through their zoom meeting that they have a very fluid relationship and great respect for one another. Through learning about Carme’s foundation and realizing that there were other children with the same diagnosis he had as a child Roger was inspired to help Carmé create a PSA video for Fundacio La Nineta Dels Ulls.
Roger shared with Megan his own personal story. A story that he had always guarded very carefully but now a story he realizes may help many through sharing the message about the importance of early detection of eye disease, especially given the emotional toll it took on him as a young boy and teenager in Barcelona. Roger is the eldest of three brothers and was diagnosed with retinoblastoma when he was only five years old. Roger’s story began on a warm summer day at the beach of Canet de Mar, a town on the outskirts of Barcelona. His eye had begun to itch so his parents took him to the doctor who suspected simple conjunctivitis. Not satisfied with that diagnosis, his parents took him to a specialist who then told his parents that it was not conjunctivitis but, unfortunately, was unilateral retinoblastoma. At that time in 1983, Barcelona did not have the network of specialists it does today. Roger’s left eye was treated with cobalt and enucleated and a sample of his tumor was sent off to Stanford University to be analyzed by geneticists. Recently, Roger decided to try to track down the Professor at Stanford, Dr. Peter Egbert, who had done the original analysis and was surprised to learn that now only was he still a professor at Stanford but to Roger’s surprise, Dr. Egbert still had the slide with Roger’s tumor biopsy sample. Roger held the slide up to the zoom camera to show the slide that Dr. Egbert returned to Roger for safekeeping 39 years after he had first received the biopsy sample.
Roger admitted to Megan that it was all a very difficult process for him. As a teenager, it was difficult for him emotionally to be accepted by his peers. While he did not lose his hair when he was going through treatment, he had trouble adapting to his prosthetic eye as he grew and changed. Megan and Roger discussed how they are happy to see that it is different today with more general community support for children with vision challenges and they both hope that makes the burden a little lighter. Megan mentioned how having examples of strong and successful adults who’ve gone on to live their best lives is a great way to show younger children and teens how there is nothing they can not do if they set their minds to it! Carmé, who joined the call helping as a translator, commented on how much hope Roger and his videography have provided for young people and their parents who are inspired by seeing an adult who has thrived living a full life with a dynamic career. Carmé told Megan that it is as though he uses his camera as his “other eye.”
Roger always had an artistic side but a lot of hard work and self-discovery to get him to learn how to translate his passion into his work and reveal his talents. Over the last ten years, Roger has grown tremendously personally and is doing exactly what he wants. Roger admits that it has been a solitary path of self-knowledge that he is still on. This self-knowing allows him to transmit his creative passion into art and to share his inner beauty through photography and videos. Carme and her Foundation have helped Roger a lot to see things differently and It has been very gratifying for him to see that his work is liked and the gratitude that the Fundació la Nineta dels Ulls shows to him. In the end, Roger has been able to transform his pain into something extraordinarily beautiful. For many years he felt alone but after meeting Carmé and the families at Fundacio La Nineta Dels Ulls, he has not only been able to help others through his videos but has also found himself healing every step of the way. It is Roger’s goal that his videos have a soul of their own and be so powerful that his message transcends the video and reaches the heart of the viewer. ” I like to think that with my work, my videos, my photos… I can help someone to have a better way of thinking about life or to see the most beautiful part of it.” We are so honored to share Roger’s story and also to showcase his incredible videos which have already been a gift to so many families and children struggling with their retinoblastoma diagnosis,
(You can watch Roger’s PSA’s for Fundacio La Nineta dels Ulls at these links here https://youtu.be/rjS9ElSL-6Q and here https://youtu.be/LcV7Kj5kqkw )